One Year

We hit our one year home mark!   Things are going pretty well.  Life is busy and five kids in a variety of activities keep me busy, but it was surreal to hit the one year mark.

We had a doctors visit in Seattle a couple of days before the exact one year to the date.  One year ago we were there for the same testing and overview, but where last year I fell asleep on the bed during Emery's echocardiogram since we came straight from the airport after clearing customs from China, this time I was able to enjoy watching her four chambered heart and correct valves.  Last year I nodded and took in that her diagnosis was correct, this year I enjoyed seeing the successful surgery.  Last year I carried Emery in, this year she skips in to show Dr. Matt that she got her ears pierced(she thought that was why we went to the doctor's appointment because of course he would want to see her new earrings!).

Last year she did NOT want to be with me, this year it was a pretty nice girls trip and we got our regular pizza and frozen yogurt together with not one meltdown or fit,  it was so lovely.  A year ago I really didn't know where our path with Emery would lead, I felt peace, but I didn't know if there would be a successful outcome with a fully fixed heart.  Now she has no restrictions and even caught a slight cold this week and I didn't go into a panic.  She runs down the airport tarmacs, I don't need to juggle bags and carry her because she does not turn blue and struggle to breathe.  If she gets tired of running, it is her legs that are tired, not her heart and lungs struggling.

We have had an interesting year full of changes and ups and downs.  She still struggles to figure out her place in this world.  When she thinks about or remembers China it is rough at home and she rejects me.  It might always be that way.  Her English has come a long way and she can communicate well, we still have shut downs at times for little to no reasons, but not anything like one year ago, and we work on expressing feelings and answering questions.

It was fun to have Emery with us on the fourth of July and think that we were so close to meeting her last year.  It was amazing to celebrate her birthday with her, not us having cake and singing to her across the world.  Things are not perfect, but we have come such a long, long way from a year ago that it is a gift to look back and see the progress.  She is moving forward in school, starting piano and dance and continuing swimming in addition to just playing and being a girl.  She is growing out her hair like Rapunzel and Mom and has even gotten her brothers to play princesses with her(they are either the prince or the horse).  She is figuring out relationships with friends but is able to interact and communicate with other kids outside of the family and loves having friends that are girls.  She LOVES skyping her friends from China who have been adopted also.

 We have been so very blessed and especially since the surgery, have been able to really move forward with relationships and interactions with family and friends since we aren't going to medical appointments out of town at least every month.  It has been fabulous.

So, we come to not totally the end of our adoption journey since it will be a part of our lives forever, but an end to this part of our story.  Thank you to all who have supported and prayed for us.  So many prayers have been answered regarding this precious girl who has charmed just about everyone she meets and has survived and thrived when the odds were so very stacked against her.  What a great gift her life is.  I am grateful to be part of it.

Home Again, Home Again

Sleeping in my own bed has never been so wonderful!!! 

We are home.  Emery is on antibiotics and wearing a mask when she goes to the doctors office for visits, and NOT going out in public until she has a clean bill of health.  Even Emery is pretty 'done with' hospitals for the time being.  Our hospital does not have a designated pediatrics ward and the iv insertion was just plain horrific.  But she wasn't on oxygen very long, was able to be responsive to the medications and is very happy to be back home.

I am beyond grateful that it was all caught at her routine post op visit and it didn't progress to being life endangering.  And I am grateful that my sons got to come hang out in the hospital during the day.  It was nice not to be the one solely entertaining a 5 year old who is already tired of being in the hospital:)  She loved playing with her brothers in the hospital, and they loved going to the hospital cafeteria.  So it was great all the way around.

Here's hoping for smooth sailing from here on out!

Minor Setback

At our post op visit early Monday morning, Emery's oxygen numbers were pretty low. So, the doctor decided to admit her to the hospital so that she would be on oxygen. A couple hours later she had a fever and xrays and blood work showed bacterial pneumonia. So, we are back in the hospital, she is off oxygen again and responsive to antibiotics.

I heard a great quote the other day, 'I am too blessed to be stressed!' That would be a good motto for me to aspire to.

Minor Setback

We are inpatient at the local hospital. Emery picked up a bacterial pneumonia, the doctors think, so a couple of days on iv antibiotics will hopefully take care of it. the nice thing is that it was caught very early, at our post op appointment this morning, and she has been able to have her brothers come play and ad stories and a couple of her aunties have stopped by to see her, and dad held her hand while getting blood drawn plus she is hoping he brings her ice cream after her nap time. Not too shabby!

Our cardiologist has been on the phone and is monitoring her from a distance which has been great. She is on low oxygen which is really helping and has a private room since pneumonia needs to be isolated;). I think the plan is for her to be inpatient for a couple days on the antibiotics, get off oxygen and then go home. We shall see. IP am grateful that it was caught and treated very early, she was fine yesterday, and so she will be on the mend soon.

Home Safe and Sound

We made it home safely yesterday. It was a long travel day but Emery did great. My husband picked us up and then went inside. Our boys didn't think we'd be home until late yesterday night at the earliest, but we were able to get on to an earlier flight. So then Emery and I knocked on the door and the surprise on their faces was so fun, better than Christmas faces;). It was the best surprise I've ever done.

It is so nice to be home. Emery slept over 10 hours last night and woke up coughing to clear her lungs this morning. So much coughing really hurts, but she is being very strong. I loved not sleeping in the hospital chair recliner thing;). Emery is worn out from the travel, but doing really well. She is walking really well, not really that much slower than before the surgery and it is her legs that tire out not that she has to stop to catch her breath. We saw a few family friends yesterday and Emery is EXTREMELY proud of her scar, as well she should be, and does not hesitate to show it to anyone she knows(we'll get to modesty later;)) The adults and boys think it is awesome and her friends that are girls have been nice enough to just not say anything at all:)

I feel so blessed that with this adoption and post adoption process everything has gone pretty much according to our best case scenario and we now have a little girl with a fully repaired heart and pulmonary system who has a great life expectancy prognosis and even our attachment didn't really take a step backwards during the last couple week which I had been concerned about. Whenever I would start to get concerned or worried, the answer to my prayers has always been that God had granted me peace and I should rest on that peace, and while I know that there was stress to be sure, I felt His peace.

In the hospital one of the chaplains stopped by several times. The first time she asked if anyone back home was praying for us. I had to smile. I told her we had people and prayer chains lifting Emery up in prayer from Maryland to Chicago to Tennessee to Montana, Idaho, Utah, Australia, California, Canada, Alaska and places in between but that I would love to add hers to the others that were keeping Emery buoyed up;). Thank you for those many prayers, we felt them, they carried us, and God answered in an amazing way.

x

Happy Girl

Almost ready to go home, should be home tomorrow!!!!!!! There are only so many flights to Alaska a day and we won't make the connections today but the hospital is kicking us out! Time to go home where there isn't room service for Emery, someone to clean the room each day, a button to push if you need anything and people that act like they are happy to see you all the time. Vacation's about over;). Truly, I think the staff is going to miss the daily bows. and we have been cared for very well. There has been a great team of doctors who have watched over her recovery on top of great surgeons who check in on us. almost all of the nurses have been great. The social worker has been a gem and our Child Life Specialist has been wonderful. the respiratory therapists that come every day have spoiled Emery, she is going to want a 'massage' every day. Even the x-ray, echo, keg, and nuclear medicine techs have been fantastic, Emery thinks they take so many pictures of her because she is so pretty, I'll admit to possibly encouraging that line of thinking;)

Thank you for the continued prayers, last weekend was a scary time with the sudden respiratory issues that I have tried to downplay, but it was pretty bad, and now she is doing great. I know there are a lot of prayers being answered and once again I have so very much to be thankful for, not the least of which is that I get to see my guys!!!!

Fun Times

Hello Kitty came to the hospital play room...and they had matching bows! Doesn't get much better than that;)

OFF OXYGEN

DOING GREAT!!!! Probably home home this weekend;)

Doing Good

We moved out of ICU to the regular wards which is good and bad. Emery's care in the ICU was for the most part, not just good, it was phenomenal. we mostly had fantastic nurse and doctors and therapists and the few that weren't were good,plus the nurses were in room so she was always getting great care, and it was quiet so she could sleep through the night.

Now the doctors goal is not to get Emery stable, but to get her home! As soon as she is stable off oxygen we can go home, right now she is still on oxygen, there is one more level that is less before she is off, which is great. she walked down the hallway to preschool and back this morning and is exhausted. we will go for another, longer walk this afternoon.

So grateful for a great repair one week ago, feeling very blessed!

Happy Valentine's Day!

Out of ICU!

Happy Girl

We currently have orders to leave CVICU to the regular ward tomorrow!!!!! WOOOHOOOO! Drs. are being a bit cautious to watch her one more day to observe since she crashed so fast but they are ordering it for tomorrow if all stays the same or improves! And the bows are still in, she is doing great!

Day5 Post-op

This is Emery's cool medicine mask for her respiratory treatment. She wears it for 5 minutes a couple times a day . She had her last two chest tubes out this morning, is on regular oxygen so no more high flow off the bipap machine, has dropped to respiratory treatment every 6 hours, quaking Tylenol as needed, and probably getting her arterial line taken out today as well, there is a lot of talk about moving us out of CVICU in he next day or so. She ate solid food this morning,oatmeal and toast never tasted so great! emery and I usually make cookies together every Sunday while the guys go to church, we were hoping to have our cookie day yesterday, but when she brought it up this morning the doctor said today would be great and she should definitely get two because she was so good when her chest tubes were pulled and stitched up. She's definitely on the mend!!!! YAY!!! So many answered prayers. As for me, I got 7 straight hours of sleep last night and a shower this morning, such a great day already:)

A New Day, A New Bow

Today Emery is breathing without the mask, is off all continuous medicine, has had one chest tube pulled out, is getting her neck iv out and will hopefully start eating again. what a day of answered prayers.

Asleep on Mom's Lap

Wires Removed! Able to be a bit more mobile, not able to breathe without the mask yet, but hoping to be able to eat dinner tonight

Out of Bed

prayers

we are so thankful for the many prayers offered for both Emery's surgery and recovery. if you could pray for her breathing and lungs, we would really appreciate it, we weren't able to have the wires removed today as hoped for due to some respiratory issues and it still isn't completely stable, so if it does stabilize tonight, then tomorrow;)

Post Op

We are day two post-op. The goals for today are to have wires removed and the iv in her neck taken out. She is uncomfortable but doing well. She is going to get up and walk around later today and at rounds this morning she asked the doctor for chocolate ice cream. I might be biased, but I think she is a favorite and has charmed everyone as well as being such a trooper that the doctor upped her pain meds based on posture and breathing since she doesn't complain too much.

She loves reading the cards, thank you so much, they are a highlight for her. We are doing good, feeling blessed, couldn't ask for more.

Day 2 Post- op

Sleeping Sound

Extubation!

Emery already got her breathing tube out! That is very early, they were hoping to take it out early tonight which would be still early but her numbers are so good that they took it out. she is still on oxygen, but no tubes down her throat!

Looking Great Post-Op

Silly Face

Pre-Op

Doing Good

Emery is doing really well this morning. They are starting to wean her off the ventilator and decreasing the amount of some of the medications to help heart function, which is great. Her drainage from her heart has slowed and she is doing we'll.

I got 6 1/2 hours of sleep last night which is more than I have had bin the last few days combined so that was awesome;)

Thank you again for all of the prayers and cards. I got a stack this morning and will read them to Emery when she wakes up and is coherent. The website address for sending online greeting cards that the hospital prints out and gives to Emery is www.lpch.org


Can't wait to see what today brings;)

ANSWERED PRAYERS!

I am so thrilled to be writing this. Emery isn't out of surgery yet, and the next 72 hours are critical for recovery, but the surgery is complete. I just met with the rock star surgeon who performed a complete repair of Emery's pulmonary system and heart. He said that her lifetime prognosis depends on her pulmonary pressure being low right now, and it could not be any better. Her sats are the same as a healthy heart person. He was hoping to use three collateral vessels to help reroute the blood and tie into the pulmonary artery and was able to use 5. So the surgery went even better than expected, and was faster than anticipated as well.

I am so grateful for the prayers that have been offered to preserve Emery's health and especially for the surgery today. I can't wait to see her in about half hour even though she will probably be sedated for a day or so. I am so grateful for the power of prayer and for a God who hears us cry unto Him.



YAY'!!!!!!!!

Pre-Op

Travel yesterday went well, two flights, one shuttle ride and a clean hotel, not much more you could ask for. Emery's highlight was the pizza at SEATAC.

THis morning we got to the hospital at 6:30 and have finished the chest x-ray, blood work, lab work, echocardiogram, and will still have an EKG and meetings with the surgery team. Emery is doing great, she doesn't like bloodwork but was brave and stayed calm. She got an angel beanie baby bear for being so good during a very long in depth echo so she is a happy camper right now.

Lucile Packard Children's hospital has a really cool feature on their website. www.lpch.org. You can send a greeting card email and they will print it out and deliver it to Emery's room. Her name is Emery Min Mattson. I think surgery starts at 6:30 tomorrow morning and will be all day. thank you for your prayers, we feel and appreciate them.

10 Days

We are counting down.  10 days until we leave.  It takes us about a day to get to California and then pre op the next day and then the surgery on the 8th, Wednesday.  If you are praying specific prayers, her head surgeon is Dr. Hanley:) 

Emery is currently super excited and the guys are treating it like a vacation from all things girly and getting to have dad around for a couple weeks, so I guess I am the only one not expecting to have a complete blast;)  Emery just knows all of the things that she is currently not able/not allowed to do and can't wait to live life without restrictions so even though there is a bit of a rocky path to get there she has been looking forward to it since China, as have we. 

We will be in the CVICU for a few days then will be transfered to a regular room.  Leaving for home just depends on how Emery recovers.

And Emery has been with us 6 months, half a year, she is, according to her, Chinese- AMERICAN!

January

January has been spent in the snow:)  Emery made a snowman and snow angels and loves to eat the snow, we have had to limit that since she will try to pick it up from any surface...the parking lot at Walmart...no, a random car...no, freshly fallen in the yard, ok.  She is dying to play outside for a long time and being the protective mom I am(just over two weeks until surgery!!)  I limit it so she doesn't catch a cold.  She is so excited to get her heart fixed, since she is having a harder and harder time keeping up with her brothers and running and jumping which she loves to do.  Her surgery is scheduled for February 8th.  I will post before then, but would appreciate any and all prayers that could be sent heavenward for her.  I am excited to be done dealing with insurance, travel coordination, doctor coordination, monitoring her health, etc. even though, honestly Seattle Children's couldn't do much more to make all of this go more smoothly.